Development of a Tele-Community Health Worker Program for Sickle Cell Disease

Background: Sickle cell disease (SCD) is an inherited hemoglobin disorder that affects 1 in 365 African Americans. Individuals with SCD suffer from physical, psychological, and social comorbidities that impact effective disease management. The challenges of providing care to this complex-needs population has led to fragmented care, poor patient experiences, and inadequate implementation of evidence-based SCD management. A community-based organization led community health worker (CHW) program to bridge gaps in healthcare services to for individuals with SCD.

Methods: This initiative uses an observational design to: 1) train CHWs to offer tele-health support (N=5); 2) implement a six-month CHW program with adults ages 18 and older (N=50); and 3) evaluate the impact of the program among participants and CHWs.

Program Overview: All CHWs received an orientation to discuss program protocol and activities. Orientation was followed by training in Remote Community Health Worker services. Participants received a monthly phone call from a CHW for 6 consecutive months. Participants completed pre-post surveys assessing SCD self-care, patient activation, and satisfaction with healthcare. Participants also completed debriefing interviews following their sixth session.

Results: CHWs and participants identified as African American (100%). Average age was 44 (27-65) Most CHWs had SCD (80%) and reported having no prior CHW experience (80%). The average age of participants was 32 (18-55), with a range of 19-52. At baseline, 56.7% of participants disagreed or were neutral in describing their satisfaction with the current medical care for SCD. At baseline, 54.6% agreed or strongly agreed that it was difficult for them to get medical care on short notice. 97% of participants had never received CHW services.

Significance: This project implemented a community-based strategy to extend reach for the evidence-based management of SCD. This model builds on our understanding of barriers and facilitators to implementing a CHW program for SCD.